Nancy was 33 and seven months pregnant with her second daughter when she was diagnosed with multiple myeloma. Seven years on, she describes how her family, specialist counselling and faith gave her strength to face up to cancer

 

My diagnosis

I was an anomaly for this disease, which typically affects pensioners, very rarely women of childbearing age. I don't think my doctors had treated anyone with this disease who was pregnant before.

It was an absolutely devastating diagnosis to receive. The life I lived ended on that day. I didn't comprehend the limitations, the trauma, the stress, the anxiety or the loss that would come as a result of the diagnosis.

I was fit and healthy, I didn't smoke, I didn't drink alcohol excessively or take drugs. If I could have attributed the disease to something tangible then I think I would have been able to reconcile the diagnosis a bit more, but I couldn't.

I'd never heard of multiple myeloma. I was assured it is not terminal, but what has been really difficult to come to terms with and live with is the fact it is an incurable cancer. It can be treated and it can be managed, but to date there is no cure.

 

Pregnancy, myeloma and chemotherapy

My daughters gave me the motivation to want to live and to undergo treatment, but it came with immense sadness because all along the way I've thought I don't want to die yet, and I don't want to leave my children at such a young age because they won't remember me.

My daughter was born prematurely by planned C-section. I spent my maternity leave having chemotherapy and my first stem cell transplant. I'd bring my daughter in with me to the chemotherapy sessions and feed her in the nurses' room. They all got to know her.

In the past seven years I've had more than 20 rounds of chemotherapy and three stem cell transplants, including a donor transplant from my sister. With every round of chemotherapy and every transplant I've had I've lost my hair, I've lost my confidence, I've lost weight and all of those cause a massive crater in my sense of self.

 

Caring for body and mind

I have heavily relied on the counselling service at King's College Hospital in London. I met Philip Alexander, a haemato-oncology psychotherapist, when I was in hospital having my first transplant. That was in 2013 and I still engage with him today.

When I met Philip I was at my most vulnerable. It's not easy to turn to family and friends because they are so very close to you. I worried about how they were feeling and about them seeing me disintegrate. It is quite difficult for my mum, for example, to see that.

Counselling provided me with an additional safety blanket. I have an amazing family, I have wonderful friends and I am a Christian so I connect with my church. All those elements have provided me with different forms of psychological and emotional support.

I feel that blood cancer is a hidden disability. Throughout my treatment, even though I had lost a lot of weight and was undergoing gruelling treatment, I never looked very ill. This meant it was difficult for some family, friends and colleagues to understand the severity of my condition. Counselling really helps me navigate this.

 

My life in remission

Without Philip’s counselling it would have taken me longer to achieve a sense of perspective over my future, because with my cancer diagnosis at one stage it felt like there was not much to live for. The counselling gave me an alternative way of thinking and in a strange way for me it normalised an abnormal situation.

I am not just a person with myeloma, I am a mother, a sister, a daughter and a friend. Counselling helped me piece these 'roles' together, so that multiple myeloma did not define and take over my being. 

As I felt I had come through the worst of it I wanted to concentrate on the living part, give something back and raise as much awareness as possible of blood cancers. So in the past few years I organised a charity fundraising ball in aid of Myeloma UK, I attended for the first time the 10th anniversary of the African Caribbean leukaemia trust (ACLT) fundraiser, which was amazing as I met other black women who also had stem cell replacement transplants and could appreciate the intricacies of going through the process from a black woman’s perspective.  I was also honoured to speak at the 'Leaders in Leukaemia' conference in 2019 to give my view of the emotional and well-being care I have and continue to receive as a haematology patient at King's College hospital.

In 2019 I also started a Postgraduate Higher Certificate in Humanistic and Psychodynamic counselling and celebrated my 40th birthday. I threw a big party for my family and friends, making me so happy to be alive and is one of my fondest recent memories.

 

Life during COVID-19

Just before the coronavirus pandemic changed our world, I felt I finally had regained more autonomy and control in my life. Then we went into lockdown, which brought back memories from my diagnosis treatment and hospitalization. Once again, I had to relinquish a lot of my independence to keep myself safe. That was difficult, I felt it was another point in my life when time was being taken away from me.

Shielding has reminded me of the fragility of my health, especially as my employer is sensitive to my condition, highlighting some of my insecurities and once again making me face the reality of my situation. I am very fortunate that my employer is understanding, and I am able to work from home.

As much as possible, whilst shielding I am trying to strike a balance in my life, trying to overcome the social anxieties that can affect me. I follow social distancing guidelines and still go to the park with my two daughters, I had to create a bubble for myself so that they still have opportunities to see family and friends. 

Something I found really interesting about lockdown is how it has made many more people appreciate the simple things in life. This made me realise that following my diagnosis, I had already gone through that process of thinking and have been making sure I take time to spend time with my family and friends. 

Despite these difficult times, I have had happy moments more often than not, whilst adjusting to an alternative way of life.

 

My tips for anyone affected by a blood cancer

When asked by Leukaemia UK to share my tips to help support others affected by a blood cancer, I immediately thought of sharing the tips I am drawn to:

Honesty. I recommend being honest with yourself about what you can, can't and won't and will do. 

Ask for help.  Even if it's hard to admit to yourself that you need help. My diagnosis has made me realise the importance of this.

Recoup your energy. It's OK to have times when you want to be by yourself or rest. I can't give anything to anyone if I don't have the energy to do it. Sometimes I 'check out', dedicating a little time to myself. Resting enables me to digest where I am so I can recoup my energy.

We are extremely grateful to Nancy* for sharing her story to help raise blood cancer awareness and wish her all the best for her future.

Leukaemia UK funded the first service of its kind to offer dedicated counsellor and clinical psychologist support for haematological patients at King's College Hospital in London. Through the Leukaemia UK Mind & Body Team, people affected by blood cancer will routinely receive psychological support where needed. It is hoped that by making emotional support an integral part of everyone’s treatment, psychological problems may be identified early or even avoided altogether. Leukaemia UK hopes to fund more services like these across the UK.

Read more leukaemia and other blood cancers stories.

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*Name has been changed.